Thursday, July 01, 2010

Decisions, and a plan

I met with a new oncologist today, this one at the Minneapolis Clinic
location. Very knowledgeable, very patient, very honest, great sense
of humor. White hair, white gunslinger mustache, kind demeanor. I will
call him Dr. Grampa. My goal has been to take Dr. Hunter's (the Mayo
Dude) advice and do the chemo first. I was trying to get ahold of Dr.
Ungawa until I realized that this ultimately required only the buy-in
of my oncologist. Ungawa seemed a little sheepish today when I talked
to him on the phone and told him that I was following the advice of
the Mayo doc. I still may have to use him for the surgery, so I didn't
burn any bridges.

Dr. Grampa agreed to do chemo *before* surgery, which is great news in
my opinion. This is a newer way to do things, and it just now becoming
the brand-new standard when patients are young enough to handle the
chemo first. Occasionally an older patient may have complications from
the surgery and it may delay the start of chemo for a few months,
meaning the cancer will have time to spread. Doing the 3 months or so
of chemo beforehand will potentially kill the cancer, but I still need
to plan on having a "partial cystectomy" afterward. This is a fairly
invasive surgery to remove part of the bladder, leaving everything
basically the same as it was, except that I'll have to take a whiz
about 10% more often. Big deal, I say.

The chemo will begin this next Tuesday, July 6th. I am nervous. I have
heard widely varying stories of chemo reactions. I am learning that it
depends partially on the specific drugs they treat you with (I will be
treated with Gemcitabine and Cisplatin). On this regimen it is common
to lose your hair and feel nausea. As mentioned in another post, the
anti-nausea drugs can sap your strength even more so than the chemo
drugs, so lets hope that I don't experience too much nausea.

Many have asked whether there's any food they could bring over or
something during these treatments. I am hugely touched by this and it
means a lot to me to have such generous offers. Honestly, I have no
idea what will sound good or what I will be able to keep down, so I'll
wait a bit before taking advantage of the meals-on-wheels offers, if I
may, which may be a huge life saver later.

Many epiphanies today:

1) I reflected today on the apparent un-coolness of my cancer. I was
at the pharmacy picking up a few prescriptions and there was a fancy
breast-cancer survivor end-cap. Pink ribboned coffee mugs, key chains,
t-shirts... everything you can think of. Was there a urinary cancer
end cap? A single yellow ribbon? No. Clearly, I got a second-rate
cancer. Figures. People like breasts (who doesn't?) and as humans we
spend very little time thinking about our bladders, so perhaps that's
why. Still. Grumble.

2) On a less curmudgeony note, I remarked to R this evening that this
process could easily be very lonely or scary, and -- thanks to the
enormous support I have had -- I feel strangely un-lonely and un-scared.

3) And, I realized when driving past my old vet's office today that I
took it harder when my dog Mia was diagnosed with cancer than when I
got my own diagnosis. I don't know why this is, other than she was a
creature under my care: it was my job to watch out for her. I can't
really see the forest for the trees, I guess: its harder to view one's
own possible mortality from the inside than to see the possible
mortality of a loved one. Or at least it is for me.

On Thursday I will attend a mandatory "chemo class" at the
oncologist's with my mom, which I hope for her sake is nothing like a
Lamaze class: If they make her push around a fake I.V. pole the whole
time just to make me feel better, I may trash the place.

The weekend starts for me Thursday evening, and a merry weekend it
will be. I will play music, stay up too late, see old friends and be
as prepared as I may ever be to begin the chemo next week.


Anonymous said...

Just out of curiosity, can you find out if your new onco used to work at Parker Hughes Cancer Center. There was a doctor there who fits his description who was a hoot 'n a half and awesome, too. I can't remember his name off the top of my head (I don't remember a whole lot of details from when I was going through chemo), but if that's him, you've got the right guy :)

Also, after having been the patient and the care giver, I definitely found that being the care giver was much harder than being the patient for the same reason you put down.

Hope to see you around this weekend!
Mary Rohe

Eclector2 said...

You and Mary are right about the caregiver role. It is painful because you are helpless to DO anything to make it all right.

When you broke your leg, Michael, and they had to reset it so brutally, I could hear you screaming in pain from the next room at the ER. I told you later I could not bear that you had to go through that. You gave me a look and said something like "Well, I'm the one that had to go through it." I hoped then that you would come to understand what I meant. That I could not bear that you, my son, had to endure such pain and that I, your mother, could not protect you from it. That's kind of where I am now.

Love, Mom

Eclector2 said...

Michael you could post this on your blog:

On the subject of food: I learned that small bland meals might be best for awhile. They say it is best not to eat your favorite foods when you have nausea since you might be turned off from them later. Cereals, crackers, broth, and jello are good for starters. Avoid spicy, crunchy, fried, strong smelling foods.

Ensure is good to have on hand, plain crackers, popsicles, high protein snacks, smooth peanut butter, mild cheeses, yoghurt, cranberry juice, rice, potatoes.

Michael wants and needs to add more fresh veggies and fruits but should avoid citrus fruits and tomatoes. I think small frozen meals of rice and veggies that he can warm in the microwave would be good.

lsikora said...

Hey, Michael -

I'm amazed at your ability to maneuver through the morass of diagnoses, doctors, and decisions......truly incredible!!!

I liked your comments about the uncoolness of one organ getting the same disease over another organ getting it - I experienced this when I worked at the kidney/liver transplant center - everybody loved heart transplants, because, well, it was the heart, and a much more popular organ, with much more romantic connotations......but, really I always like the promotional kidney and liver stress balls (in the shape of kidneys and livers) better than those for the heart........well, actually the brain stress balls are the best, but unfortunately, they don't give transplants for those at all.....anyway...

I have a question...does Ungawa do partial cystectomies? I seem to remember from working at the transplant center, if you can say one doctor can't perform some kind of procedure, you should be able to kind of "contract out" to a doctor who does...but of course that was a long time ago, and every insurance is different....

lsikora said...

I agree with everyone, too, that the "caregiver" has the harder time....those feelings of helplessness can even make one do weird the time I got in an argument with Ed while he was in the ICU, and I stormed out of the hospital room and went home (clearly he was at a disadvantage in that argument) of my finest caregiving moments

J said...

Your thoughts about friends wanting to help made me think of this site that a friend told me about shortly after I got my diagnosis. Using it, along with appointing a friend as my "volunteer coordinator," was extremely helpful.

The site lets you post tasks that you could use assistance with (I used it for everything from bringing meals and cleaning to simply visiting/checking in) and your friends can sign up. It streamlines the whole coordinating process and makes it easy for everyone.

Use or ignore - whatever fits for you. :-) -Jill S

Anonymous said...

Hello Michael. I just wanted to say hi. I'm lurking around and hoping you're doing as well as you can. Actually, you seem to be doing great with all this new information and life changes, it's amazing.

Also, I don't know if you already have but if not, you should see if you're insurance covers a nutritionist. A lot of medical coverage allows for visits from a clinical nutritionist when you're receiving chemo and cancer treatment. They can give you a good idea of what's good or not in terms of your special needs.

Hugs, Shannon Perry

Anonymous said...

Hi Michael,
You are so creative... why don't you design a bladder cancer symbol?! It doesn't have to be pretty and pink. Breast get way to much attention anyway.... I work with a company in Denver that we can print T-shirts, mugs, etc...
It could be a good fund raiser for you.
I would proudly wear a t-shirt to support you.
Cindy Lichfield

M said...

Thanks, all!

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